Register Here For the 2021 Webinar Series

About the Pediatric Palliative Care 2021 Webinar Series

There continues to be significant data highlighting the workforce shortage in pediatric palliative care and as the number of children with chronic, complex and life-limiting illness continues to increase, the training needs of physicians and healthcare teams has increased as well. Many adult providers, family practitioners and smaller hospice teams have identified training as the leading barrier to their ability to provide end-of-life care to children. Larger systems with new or established pediatric palliative care (PPC) teams often struggle to find time for education or funding to support professional development.

A team from Pennsylvania’s Pediatric Palliative Care Coalition (PPCC), Greater Illinois Pediatric Palliative Care Coalition (GIPPCC), Children’s Hospice & Palliative Care Coalition of California (CHPCC), Jacob’s Heart Children’s Cancer Support Services, and the CSU Shiley Institute for Palliative Care have collaborated to offer the PPC Webinar Series to raise the visibility of pediatric palliative care and to build clinicians’ competencies and confidence in providing care to children.

2021 Pediatric Palliative Care Webinars

Register Here for the 2021 Webinar Series

The Use of Telemedicine in Pediatric Palliative Care

In this webinar we will define telemedicine (TM) and review what is known about it from the literature. Through sharing examples from two different pediatric palliative care (PPC) practices, we will review key aspects of providing TM and share outcomes from these experiences. We will also look forward to the use of TM in the future as medicine generally, and PPC specifically, adapts to a post-COVID world.

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Learning Objectives:

1. Define telemedicine within in the context of telehealth interventions

2. Summarize the literature on the use of TM for PPC

3. Use two example of TM programs to demonstrate key elements of implementing this model of care and explore future opportunities and challenges in the use of TM for PPC in a post-COVID world

Presenters:

Kimberly Bower, MD, MPH

Dr. Kim Bower is the medical director for the Palliative Care Program at Blue Shield of California and is a palliative care physician at Rady Children’s Hospital San Diego (RCHSD).  She lead the development of the telemedicine within the RCHSD home-based palliative care program and the expansion of telemedicine into the outpatient clinics.

Debra Lotstein, MD, MPH

Dr. Debra Lotstein is Chief of the Division of Comfort and Palliative Care in the Department of Anesthesiology Critical Care Medicine at Children’s Hospital Los Angeles (CHLA) and an Associate Professor of Clinical Pediatrics at the Keck School of Medicine, University of Southern California.  Dr. Lotstein oversees the clinical, educational and research activities of CHLA’s interdisciplinary efforts, and is an attending physician for the team’s inpatient and outpatient clinical services. Her research focuses on improving access to home-based hospice and palliative care for children with serious illness.

Krishelle Marc-Aurele, MD

Dr. Krishelle Marc-Aurele works as a neonatologist at the University of California, San Diego Jacobs Medical Center and a palliative medicine specialist at Rady Children’s Hospital. She is an Associate Professor of Pediatrics and the Program Director for the Neonatal-Perinatal Fellowship.

Together in the Sandbox: Palliative Care and Complex Care Partnerships in the Medical Neighborhood

In this talk, we will review the current state of pediatric palliative/hospice care, including the overlap between palliative and complex care principles. We will explore the medical neighborhood as a common ground to offer seamless, integrated care across the continuum for children with serious illness, incorporating palliative/hospice principles as well as primary care. Strategies to conceptualize collaborative involvement without duplication or territoriality will also be examined.

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Learning Objectives:

1. Accurately describe the concept and purpose of the medical neighborhood for seriously ill children

2. Identify three unique benefits pediatric palliative and hospice care can provide to the medical neighborhood for seriously ill children.

3. Describe the role of primary palliative care in the care of children with medical complexity, and how pediatric palliative and hospice care teams can facilitate this role

Presenter:

Sarah Friebert, MD

Dr. Friebert is the founder and director of the Haslinger Family Pediatric Palliative Care Center and the Expressive Therapy Center at Akron Children’s Hospital. The Center hosts an accredited palliative care fellowship program and held Advanced Certification in Palliative Care from The Joint Commission. In 2012, the Haslinger Center received the Circle of Life Award from the American Hospital Association, a national award honoring innovative programs in palliative and end-of-life care. Dr. Friebert received her medical training at Case Western Reserve University’s School of Medicine. She completed her residency in pediatrics at the Children’s Hospital of Philadelphia, and her fellowship in pediatric hematology/oncology at Rainbow Babies and Children’s Hospital. She is Professor of Pediatrics at Northeast Ohio Medical University (NEOMED) and past president of Akron Children’s Hospital’s medical staff. In 2009, she was awarded the Children’s Miracle Network Achievement Award for her transformational work. In 2011, she became the first chair holder of the Sarah Elizabeth Friebert Pediatric Palliative Care Endowed Chair. From 2012-2015, Dr. Friebert was a co-Principal Investigator for a Centers for Medicare & Medicaid Health Care Innovation Award examining care coordination for children with complex medical conditions. She is consulting Pediatric Medical Director for Hospice of the Western Reserve and for the National Hospice and Palliative Care Organization, and Program Director in the Center for Healthcare Services Delivery Research and Innovation at the Rebecca D. Considine Research Institute at Akron Children’s Hospital. She also founded and serves as faculty for the hospital’s Addiction Services Program.

Using POLST/MOLST to Engage in Meaningful Conversations in Pediatric Palliative Care

This webinar will offer an overview of using POLST/MOLST in pediatric care, and is applicable to both seasoned and novice POLST users. The presenters will focus on how a POLST can be used as a tool to speak with parents about goals of care and what different states are doing with POLST, across different settings of care.

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Learning Objectives:

1. Participants will be able to describe different ways to identify the three main sections of the POLST/MOLST Form

2. Participants will be able to discuss the value of this tool in multiple settings

3. Participants will be able to discuss the use of this tool in defining goals of care

Presenters:

Christy Torkildson, PhD, RN, PH, FPCN

Christy Torkildson is an educator and administrator focused on quality improvement, the intersection of ethics and palliative care, access to care, advance care planning, program development and models of care, interdisciplinary and diversity in education. Christy has a diverse background but has been focused on palliative and end of life care since 2000. She has been an active member of HPNA for several years; has served as the pediatric SIG facilitator, served as a leadership mentor in the new leadership development program, served as a member of the Board of Directors and was inducted as a Fellow in Palliative Care Nursing in 2016.

Christy is also a national faculty member for ELNEC – Pediatric Palliative Care and ELNEC -CORE and served on the advisory committee in the development of the pediatric ELNEC curriculum. Christy is a facilitator for the Hospice and Palliative SIG for Sigma Theta Tau; she is co-Chair of the Pediatric e-Journal and a member of the Pediatric Advisory Council for NHPCO. Christy has developed several palliative programs including the first pediatric facility focused on palliative care in the US. Christy is also a Trainer for POLST and co-authored the curriculum for use with pediatric, adolescent and young adults for the state of California. Christy earned her doctorate at the University of California San Francisco, her MSN from the University of Phoenix and her BSN from the University of Miami, Florida and recently completed a certificate program in Bioethics. She is married to Joe and is the mother of 4 daughters.

Marta Friedman, LCSW, ACHP-SW, JD

Marta Friedman is currently with the PACT (Palliative Care) team at UCSF Benioff Children’s Hospital Oakland. She is the Social Worker on the PACT Team and the Bereavement Coordinator for the hospital. She began her career in social work and advocacy working 15 years with individuals and communities effected by HIV/AIDS, beginning in the earlier years of the epidemic. This was a time when issues surrounding how medical decisions are made, and by whom, along with many other matters of human rights and access to services, were paramount. She has been working in Palliative Care for more than 18 years, engaging in direct service, program and policy development, education, and advocacy on both the micro and macro levels. Marta was an early adopter of the POLST form when it first became available in 2009.  Providing the venues and tools for voices to be heard is a constant and immutable priority.

Marta went to law school at night while working full time in social work, focusing on public interest and health law.  She completed her BA, with a major in Psychology from San Francisco State University; her Masters in Social Welfare (MSW), with a concentration in Health Care from the University of California at Berkeley; and her JD from Golden Gate University School of Law. She is licensed by the California State Bar, the California Board of Behavioral Sciences, and credentialed in Hospice and Palliative Care.  Marta is honored to bear witness, each and every day, to the lives and journeys of the many patients and families she meets.

Big Pharma – Little People

Children with life-limiting conditions have complex, frequently-changing medication regimens. Medication information is complicated to relay and difficult for patients/families to understand. Education must be engaging and developmentally appropriate for the patient. Interdisciplinary teams should work together to combine the medication knowledge with excellent patient-focused communication skills. This session will walk through three complicated pediatric cases, focusing on interdisciplinary communication strategies to ensure effective and accurate discussions with patients and families regarding medication plans.

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Learning Objectives:

1. Identify key hospice medications used to manage symptoms in children.

2. Utilize at least three (3) techniques to communicate proper use of hospice medications to children and families in accurate and developmentally appropriate ways.

3. Distinguish different communication strategies throughout the cognitive stages of development.

Presenters:

Melissa Hunt

Melissa Hunt is a pediatric clinical pharmacist with Optum Hospice Pharmacy Services where she serves on interdisciplinary teams and provides medication and symptom management consults and education. Her prior experience was primarily in pediatric intensive care following her pediatric pharmacy practice residency. She was the primary author and editor of the Pediatric Palliative Care Consultant: Guidelines for Effective Management of Symptoms. She is a member of the Pediatric Pharmacy Association and serves on the Pediatric Advisory Council of NHPCO and the Pediatric Palliative Care Task Force for the National Coalition for Hospice and Palliative Care. 

Jessica Sturgeon 

Jessica Sturgeon is a Board-Certified Music Therapist with a Certificate in Hospice and Palliative Care Music Therapy. Specializing in pediatrics, Jessica has served as a pediatric-specialized music therapist in home-based hospice, palliative care, and bereavement programs for Treasure Coast Hospice and currently also acts as a music therapist at Seasons Hospice. She has additional training in Child Life, set to complete her certification in 2021. Jessica currently sits on the Pediatric Advisory Council through NHPCO.

Transition Planning for the Fully Dependent Child

Before a medically complex, fully dependent child turns 18 years old, parents need to make a mental shift to address the needs of the child as an adult. To continue making medical decisions for a fully dependent adult child, legal guardianship will need to be addressed. Also, the child’s medical care will likely need to be transitioned to adult providers. These processes can be daunting and overwhelming and parents look to providers for support. Pediatric providers need to understand the logistical and the emotional challenges faced by families. This will allow for improved outcomes and for the patient, family and provider.

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Learning Objectives:

1. Identify 3 essential things to consider for the fully dependent child turning 18 years old

2. List 3 strategies to create a pathway for transition of medical care from pediatrics to adult

3. Understand the supports families need during this transition process and beyond

Presenters:

Kerri Padget, Community Manager (Moderator)

Kerri worked with children with complex medical needs for many years before becoming a parent to one herself. Her son Kai was born with an inoperable brain tumor that took his life  just after his second birthday. During Kai’s short life, Kerri focused on quality of life for her son and became heavily involved in the many facets of the palliative care community. Since Kai’s passing, Kerri has remained a part of this community through her work as a pediatric massage therapist, blogger and advocate for families of children with complex medical needs. Kerri believes strongly in the efficacy of whole family wellness and peer support surrounding end-of-life care for a child.  Her personal experience gives her relevant perspective that she is always happy to share with others.

Janet M. Duncan, MSN, RN, CPNP – Courageous Parents Network

Janet is a Certified Pediatric Nurse Practitioner who helped found the Pediatric Advanced Care Team of Dana-Farber Cancer Institute and Boston Children’s Hospital. She worked as a bedside nurse and educator with families who had children diagnosed with cancer and later in her palliative care role, with families of children with diverse diagnoses of a serious illness. She continues to feel passion and find meaning in  supporting families and children through her work with CPN.

Julie Hauer, MD

Julie Hauer’s clinical work, starting in 1995, has focused on the complex medical and palliative care needs of children and young adults with severe neurological impairment. Her clinical interests include symptom treatment in such individuals. She is board certified in Pediatrics and in Hospice and Palliative Medicine. Julie is currently the medical director of a long-term and respite care facility for children and young adults with severe neurological impairment and associated complex care needs. She has written a book on the medical and palliative care needs of such individuals: Caring for Children Who Have Severe Neurological Impairment: A Life With Grace.

Alyssa Siegal, MD

Dr. Alyssa Siegel is the Clinical Director of NJ Transition to Adult Coordinated Care at the Children’s Hospital of Philadelphia, a program designed to help families of patients with intellectual and developmental disabilities navigate the challenging transition from pediatric to adult care.  Dr. Siegel has a special interest in working with families of individuals with Down syndrome and has been an invited speaker at regional, national and international conferences, including the National Down Syndrome Congress (2016, 2017, 2018), the Canadian Down Syndrome Society Conference (2016, 2017), and the World Down Syndrome Congress (2018).  She has developed written and on-line resources, including the CHOP Trisomy 21 Toolkit for Transitioning to Adult Medical Care and the safety series, Keeping Your Special Needs Child Safe. Dr. Siegel is a member of the Down Syndrome Medical Interest Group, a Fellow of the American Academy of Pediatrics, and Clinical Assistant Professor of Pediatrics, Perelman School of Medicine at the University of Pennsylvania.

Barbara Swoyer, Parent

Barbara Swoyer is a volunteer, advocate, blogger and written contributor for the community of families caring for children with rare disease.  She and her husband are the parents of two adult children, the youngest of whom has a diagnosis of Dravet Syndrome and Secondary Mitochondrial Dysfunction.  Barbara is active with the Dravet Syndrome Foundation as a member of the Caregivers of Adults with Dravet Syndrome advisory group.  She has a particular interest in palliative care and health care transition issues, and is a founding parent advisory board member and frequent contributor for the Courageous Parents Network.  

Including and Supporting Siblings in Non-traditional, Multicultural Families

There are a myriad of constellations that make up a family…and, within each family, a unique identity of “sibling”, one that fiercely loves and walks alongside you regardless of the shared or unshared DNA. This webinar presents a unique case study through which participants will discover ways families identify their own family constellation and the identity of each unique sibling. Participants will learn practical and compassionate ways to address the unique experience of those grieving alongside their beloved brothers and sisters. Participants will also learn how to include siblings from diverse backgrounds and how to support them within an interdisciplinary team. Participants will evaluate different methods to support and serve siblings from diverse backgrounds.

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Learning Objectives:

1. Participants will learn how to identify and compassionately address the needs of siblings in non-traditional and multicultural families.

2. Participants will gain perspective on how to include siblings and support them in a home and clinical setting during the sibling’s unique experience.

3. Participants will learn tools to appreciate and respond to unique family dynamics and separate their prejudices regarding traditional family that will encourage a whole family support model.

Presenters:

Brittany Maldonado-Gosline

Pediatric Concurrent Care: Research Updates

Until the Patient Protection and Affordable Care Act (ACA) was enacted ten years ago, there were two care choices for children given six months to live: continue treatment or cease treatment and enter hospice. The ACA added a third choice by mandating concurrent care be offered to Medicaid and Children’s Health Insurance Program (CHIP) patients. However, there is limited evidence about the impact of this end-of-life care delivery model on patient and family outcomes.

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Learning Objectives:

1. Review the medical, nonhospice services used by children using concurrent hospice care.

2. Examine the effect of concurrent hospice care on care continuity.

3. Examine the effect of concurrent hospice care on care coordination.

Presenter:

Lisa Lindley, PhD, RN, FPCN, FAAN

Dr. Lindley is a child health services and policy researcher. Her research focuses on health care systems and policy interventions that promote quality, accessible care for children and their families at end of life. Dr. Lindley has expertise in advanced statistical techniques, data management, and claims-based data. She is the recipient of a NIH pre-doctoral fellowship (T32), AHRQ dissertation award (R36), NIH career development award (K01), and NIH research project grant (R01) in support of her research work.

Increasing Sensitivity in Clinical Practice with the Transgender Population

In clinical practice with the transgender and gender non-conforming population, a historically marginalized and mistreated population, it is vital for clinicians to practice from a place of awareness, education, and cultural humility. This presentation provides a strong foundation of knowledge for educated clinical interactions, including basic terminology, information about the disparities faced by this population, and guidance for engaging in sensitive clinical practice with cultural humility, including at end-of-life, and establishing safer environments, both in healthcare settings and when care providers are in the home.

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Learning Objectives:

1. Define distinctions between gender, sex assigned at birth, and sexuality and terms relevant to the transgender and gender non-conforming population

2. Understand disparities faced by this population and why this understanding is important to health outcomes

3. Learn tangible skills and resources to improve clinical interactions and environments and understand the importance of appropriate clinical interactions

Presenter:

Kat O’Donnell, MSW, LCSW, OSW-C

Kaitlyn O’Donnell is a Pediatric Oncology Clinical Therapist with Inova Life with Cancer. Kaitlyn has also served in clinical and supervisory roles within palliative and end-of-life care at Inova Fair Oaks Hospital, UCSD, and Nationwide Children’s Hospital. Kaitlyn is a current fellow in NYU’s Zelda Foster Studies in Palliative and End-of-Life Care Fellowship program. Kaitlyn’s areas of focus are pediatric palliative and end-of-life care and clinical work with LGBTQ+ adolescents and young adults. Kaitlyn maintains extensive professional and community involvement with and advocacy for the LGBTQ+ population, with attention to care for transgender and gender non-conforming individuals. Kaitlyn lives in Northern Virginia with her spouse and their three-legged dog.

Beyond Words: Using Expressive and Integrative Therapies as Communication Tools

Children experience their world through play, creativity, and imagination. It is how they learn and process, and provides mastery over their environment. Play becomes all the more important when faced with adversity or trauma. In a medical setting, expressive therapies can be used to help children understand and process their illness and can even have a tangible effect on their physical symptoms and overall wellness. This course will provide an introduction to the broad range of expressive therapy options that can be used as a part of a child’s medical care. Through case examples and sample interventions, the presenters will share ways in which imagery, song, words, and other forms of creativity can help a child process and express feelings related to their health and treatment.

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Learning Objectives:

1. Introduce a broad range of expressive therapy options that can be used in addition to traditional therapeutic and pharmaceutical interventions

2. Demonstrate how expressive therapy interventions can help children express underlying thoughts and feelings about their treatment

3. Describe how guided imagery may help children with pain, anxiety and relaxation as coping strategies

4. Explain at least three expressive therapy interventions that attendees can apply to their work

Presenters:

John Mark, MD
Clinical Professor of Pediatrics
Pediatric Pulmonary Medicine
Lucille Packard Children’s Hospital at Stanford
Stanford University School of Medicine

Dr. Mark received his medical degree from the University of Kansas and completed his residency in pediatrics at Children’s Mercy Hospital in Kansas City, Missouri. He then completed a fellowship in pediatric pulmonary medicine at the University of Rochester, Rochester, New York. In 1999, Dr. Mark completed the first fellowship in Pediatric Integrative Medicine at the University of Arizona. He is now a Clinical Professor of Pediatrics at Stanford Children’s, Stanford University.  Dr. Mark utilizes non-conventional approaches with patients who have chronic illnesses such asthma and cystic fibrosis. He is interested in nutrition and the mind/body approach to healing in an effort to decrease dependence on medication. 

Dr. Mark is the Program Director for the Pediatric Pulmonary fellowship program, Associate Program Director for the Pediatric Integrative Medicine fellowship and the Medical Director for the Coordinating and Optimizing Resources Effectively (CORE) Program at Packard Children’s Hospital, Stanford University.  This innovative program assists with care coordination and communication with all health care providers for children with complex medical needs.

Lily Rich – JH

Jennifer Goldhammer MM, MT-BC

After receiving her M.A. in music therapy from Drexel University in Philadelphia, PA, Jenny completed her clinical internship at the Children’s Hospital of Philadelphia, where she supported children from infancy through adolescence during their hospital experience. After graduate school, she worked for three years in the greater Philadelphia area in both school and in camp settings, as well as in an outpatient private practice. In these settings, she specialized in helping children and adolescents make social connections and develop a wider range of coping skills through creative expression. Jenny believes in working closely and collaboratively with family members, educators, and other therapists to facilitate the best possible success for each client.

Bereaved Parents View on End-of-Life Care

Despite an increase in specialized pediatric palliative care programs there remain inadequacies in end of life (EOL) care for children. This presentation will review the perspectives of 28 Spanish- and English-speaking bereaved parents who detailed qualitative experiences about their children’s end of life care. Parents’ perspectives from the study highlight the importance of 1) supporting home death and low medical intensity of EOL care, 2) policies/programs that allow families to spend as much time with their child at EOL as possible, and 3) continuing care at EOL and beyond.

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Learning Objectives:

1. Identify quality markers for end of life care for children, from bereaved parents’ perspective

2. Describe barriers to parents spending time with their children at the end of life

3. Gain practical insights about parent preferences for location of death and what factors influence those preferences (culture, economics, proximity to the hospital, availability of resources)

Presenters:

Emily Johnston, MD, MS

Dr. Johnston is Assistant Professor, Division of Hematology/Oncology, Department of Pediatrics

Janelle Molina

Lori Butterworth

Alternative Payment Strategies to Enhance Access to Pediatric Palliative Care

With the growing emphasis on value-based payments in healthcare, there is significant potential for enhanced access to pediatric palliative care services. This discussion will highlight the challenges to access of PPC services in traditional reimbursement models, and it will discuss existing state models that have been developed. Finally, a process for exploring policy and legislative opportunities to develop alternative payment strategies will be discussed.

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Learning Objectives:

1. Describe the barriers to access of PPC services due to current healthcare reimbursement models

2. Discuss existing alternative payment strategies for PPC services

3. Develop a structured process for exploring policy and legislative opportunities to develop alternative payment

Presenter:

Conrad Williams, MD

Dr. Williams is the medical director of the palliative care program at the Medical University of South Carolina Children’s System. He leads an interdisciplinary team in caring for children with serious illnesses and their families. Prior to joining the faculty at MUSC, he served as medical director for the PANDA Palliative Care Team at Children’s National Health System in Washington, DC. He also was the medical director for Chesapeake Kids, the pediatric team at Hospice of the Chesapeake in Maryland. 

Originally from New Orleans, he received a B.A. in History at the University of Richmond and attended Tulane University School of Medicine. He completed pediatrics residency at MUSC and then a pediatric hospice and palliative medicine fellowship at Akron Children’s Hospital in Akron, OH under the leadership of Dr. Sarah Friebert. His clinical interests include medical communication, home-based palliative medicine visits, and pediatric palliative care program development.

Register Here for the 2021 Webinar Series

Frequently Asked Questions (FAQs)

Individual Registration:

  • Individual registration for 1 webinar with CE credit:  $40
  • Individual registration for 1 webinar with no CE credit:  $30
  • There is a 25% discount for an individual with registrations for 4 or more webinars
  • Registration Page

Group Registration:

Our pricing structure is designed to accommodate a group of any size with any CE credit needs.
Our Registration Page automatically calculates any applicable discounts.

For pricing questions, please use the Registration Page for an initial calculation and reach out to Beth Imrem at bimrem@gippcc.org with any remaining questions.

To receive an invoice and pay by check, simply contact Beth, bimrem@gippcc.org and she will send out an invoice with payment information.

No.

Our system is designed so that every month a different group of 10 can attend. The group coordinator will receive a form each month to sign up individuals from your organization. For more information, please contact Beth Imrem at bimrem@gippcc.org.

CE credit for nurses and social workers is available through the CSU Shiley Institute for Palliative Care.

For other disciplines, attendance certificates are provided to self report CE credit.

“CEs are provided through Cal State University San Marcos (CSUSM) Extended Learning. This provider is approved by the California Board of Registered Nursing, Provider #CEP 11422, and by the Board of Behavioral Sciences, Provider #PCE-3405 through the CSUSM WASC Accreditation (Western Association of Schools and Colleges).”

For more information, please contact Beth Imrem at bimrem@gippcc.org.

The pricing sheet and registration form allows the group coordinator to assign individual designations regarding CE credit.

For more information, please contact Beth Imrem at bimrem@gippcc.org.

For the 2021 PPC Webinar series we are unable to provide CME.  We are, however, pleased to offer CE credit for nurses and social workers, as well as attendance certificates for other disciplines to self report, through our accreditation partner the CSU Shiley Institute for Palliative Care.

All webinars start at 12 pm PST / 1:00 pm MST / 2:00 pm CST / 3:00 pm EST.

Once you register for the webinar, you will be sent a link to a Zoom meeting. It is recommended to download Zoom before the first webinar.

If you have never used Zoom before, it’s easy.  View a video that shows you how to join a Zoom meeting.

If your computer audio doesn’t work, you will also be given a phone number to call in.

Feel free to contact Beth Imrem:  bimrem@gippcc.org.

Archived Webinars

Learn More About Our Archived Webinar Series